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Sunday, July 20, 2014

Well, ChinaBean never ceases to amazes us. We were told to expect 14 days in the hospital and ChinaBean was ready on day 8. I was shooting for 10 days, so I appreciate her over-achieving ways.

I think the smile says it all!

Buckled up and ready to leave.

We returned to my hometown to spend time with the grandparents and extended family. ChinaBean will have a follow-up appointment next Monday. The doctors will be looking for any type of fluid build-up around her lungs. They are also monitoring the blood flow through the new conduit around ChinaBean's heart and the oxygen levels in her lungs. For the next 6 weeks ChinaBean has some "Special Care Instructions": 1) we're supposed to keep her away from large crowds (lots of germs); 2) We are not pick her up underneath her arms, which would cause her incision to pull, and instead we scoop her up underneath her tush; and last but not least 3) she is on a pediatric low-fat diet which restricts her total daily fat intake to 15-20 grams (I feel ideas for a cookbook coming on). For the last year we have been trying to get her to put on weight. Our goal was 15 kg (we didn't make it) and peanut butter and Nutella were daily staples. We'll have to switch our goal for the next few weeks. As I understand it, the low-fat diet, will help prevent fluid build-up in her lungs and prevent unnecessary strain on the heart.

The big sisters had made a welcome home sign and theywere very excited to have ChinaBean home!

For now, we get to enjoy all the best things that summer has to offer...working in the garden, very (very) slow and safe rides on the Gator, playing outside, picking flowers, digging in the sand and playing in the water.

Checking the garden with Papa Joe.

Riding on the Gator (slowly).

Flowers for Grammy!

Playing keep away from ChinaBean.

Just checking the crops.

A little time in the sandbox.

Amelia's surgeon and cardiologist were very understanding and moved up ChinaBean's 6 week post-op appointment one week. If her incision looks good and her heart & lungs sound good, our entire family of 5 will be able to return to China together (as in, on the same flight) for another year of adventure & memories! That is good news for this mama as EBean starts kindergarten the Monday after we are scheduled to return. I don't want to miss that!

Tuesday, July 15, 2014

We're still camped out at the hospital and it's been an interesting few days.

We met another mommy whose daughter has a specialheart like ChinaBean's. The mommy had been saving thisLambie (from Doc McStuffins TV show) for a speciallittle patient and she gave it to ChinaBean. It saysseveral things including "You fixed my heart!"

ChinaBean likes that Lambie can sing & dance.

ChinaBean was making steady progress until yesterday morning. She had started to point to her chest tube sites and say "ouchie", but we weren't quite sure what was going on. By early morning it became evident that she was in pain and that there was something more significant than just some soreness. In the process of notifying the attending physician, I could hear a new sound that wasn't there before. I almost dismissed it as the sound of ChinaBean's chest tube bulbs rubbing on the inside of her pajama shirt. As Jamie and I listened more closely it sounded like a faint bubbling/gurgling sound, almost like when you're drinking through a straw and hit the bottom of the cup. And, the sound only happened when ChinaBean would take a breath.

A second chest x-ray was ordered and it showed that ChinaBean's left chest tube had slipped out some. The physician looked at it and determined it had slipped out enough that the chest tube had to be removed all together. Normally the removal of a chest tube is a cause for celebration because it means that the fluid around the lungs has decreased enough that the tubes are no longer needed. However, in ChinaBean's case her left lung was still putting out a decent amount of fluid. We were told that we needed to watch ChinaBean's breathing and that fluid in her lungs could build-up over the next day, which we require inserting a smaller drain tube. It was really difficult to see ChinaBean in that kind of pain, especially after she had made such great progress. On top of that, my parents had brought LBean and EBean to the hospital for a visit. I had really hoped to have everyone in the same room and to enjoy having us all together.

This is what happens when I tell hershe can't watch Frozen again, shefalls asleep.

About 30 minutes after the chest tube had been removed ChinaBean started to calm down and I felt like I could leave the room to see LBean and EBean. I hadn't seen them in a week and I couldn't wait to wrap my arms around them. They had some exciting things to tell me about their week with both sets grandparents and their Aunt Michelle. I decided it was worth trying to bring LBean and EBean into ChinaBean's room for a visit. We talked about how she wasn't feeling well and that if she was upset we would leave the room and go play in the activity room. My prayers were answered because ChinaBean was calmly watching Frozen (again) and the older sisters were excited to watch too. My friend Cara had given us muffins earlier in the week and I had some fresh fruit. We joked about having Sunday brunch and watching a family movie,which is very normal, but the setting just happened to be at the hospital. Before the big sisters left, we used them as motivation to encourage ChinaBean to walk part of the way to the activity room. It worked! She walked a good distance and we all enjoyed playing together. The big sisters and my parents left and headed north to the Wisconsin Dells for a few days.After they left, we got the news that a room had opened up on the other side of the hallway, which meant would officially be on the PIC side of the 4th floor. ChinaBean's new room is 2 doors down from the activity room and we are excited that it has a real door (yay for more privacy). Uncle Matt came later on Sunday afternoon and he was our first visitor in the "new" room.Removing the chest tube greatly improved ChinaBean's mood and appetite and that continued today. She is showing more of her normal personality...laughing, giggling and talking more. We made it to the activity room twice today and she walked all the way there, instead of riding in the wagon for part of the trek. One of the fun things we did today was to paint ChinaBean's toenails and fingernails. That started a running joke about how the hospital was the most expensive spa we've ever been too. In fact, it is so exclusive that you have to be invited to come.

Getting a sponge bath and hair wash.

Time to be clean.

Pedicure anyone?

We had another visit from some special friends. Some of the associates from Kohl's came to the 4th floor for a visit today. They found us in the activity room and gave ChinaBean a stuffed monkey and a book.

Enjoying her new book and stuffedanimal from Kohl's.

Grandma DiDi & Grand Larry came for a visit this afternoon. ChinaBean enjoyed seeing her grandparents and she took them on a very long tour of the PIC floor in the early evening. She scooted herself around for over an hour. That's the longest she's been active since her surgery.

Hoping on the tricycle and ready to ride.

She wore herself out!

There is a rumor going around that ChinaBean might get her other chest tube out tomorrow. Let's hope the rumor is true!

Saturday, July 12, 2014

Seriously folks, I think ChinaBean has watched the Disney movie Frozen 10 times in the last 48 hours. But, since ChinaBean is the one recovering from heart surgery she gets to choose the movie. The hospital put the movie on their hospital entertainment network about 2 weeks ago and I can guarantee that it has the best money they've spent. One nurse told us that before that the hospital only had 2 copies of the movie and they had to track which room had the movie for fear that the movies would not be returned.

Watching it with mama.

And again with Baba.

ChinaBean has officially been moved down in her level of care to Pediatric Intermediate Care, which means the nurse to patient ratio is 3:1 instead of 1:1 or 1:2. The hospital is at full capacity on our floor, so even though she's stepped down in care, we haven't moved rooms.

ChinaBean walked a little yesterday during one trip to the activity room and today we bumped it up to two trips. Her pain is being managed by Tylenol and Ibuprofen now and she is making good progress. We're still waiting for a few non-heart related systems to return to their normal functions, but that will come with time.

Playing on the iPad in the activity room.

And a tea party with Baba and a doll I affectionately call Stinky Baby.

Even though Elsa & Ana are ChinaBean's favorite princesses right now, we did get to see many of the other Disney Princesses today. Some students from the choir at IVC (Illinois Valley Central) have started dressing up as different princesses, and Prince Charming too. They visit the hospital to sing to the children and hand out stuffed animals. Cinderella performed for us and we really appreciated their visit.

Prince Charming and the Disney Princesses

My princess with the other Princesses.

We are starting to see glimpses of ChinaBean's personality. She talked more today, smiled some, did a little of her dramatic arm movements for the song "Let it Go" and even gave her day-time nurse a good-bye wave. Everything is moving in the right direction. Jia you!

Friday, July 11, 2014

ChinaBean's Fontan surgery went well and she is successfully on the road to recovery!

The night before her surgery we decided to combine the best of East & West cuisine and we dined on Chinese and pizza. It was a good "last meal" before the big day.

Mmm pizza & rice!

ChinaBean stayed up so late the night before her surgery; she was being silly and could not get herself to sleep. I think that it worked in her favor because she was so tired in the morning that she forgot to ask about breakfast and water. She was pretty relaxed going back to surgery (a little medicine helped with that too).

Cuddles under a warm blanket with mom.

We arrived at the hospital a little after 6 am and they took ChinaBean back to surgery around 8 am. We were in the waiting room for about 5 hours or so until we were called upstairs to see her. Several visitors came to visit, both friends from our time in Illinois and Suzhou, as well as support from the Grandmas and Grandpas.

Can you tell they're related?

ChinaBean's first night went well. She had some nice long stretches of sleep and the nurses kept on-top of the pain. Her first day post-surgery we got ChinaBean up and sitting in the chair and taking a few steps. She has started eating and she will be on a low-fat diet until she is discharged.

We had a brush with local fame yesterday. Julie K (http://juliekmusic.com), a local singer and performer, was at the hospital. The Child Life Specialist brought her to our room for a private concert. Thanks for stopping by Julie K!

Thank you for all of the cards, texts, messages and videos! We have enjoyed looking at them. We're still working on getting a good smile from ChinaBean and it's nice to have things to cheer her on.

Tuesday, July 8, 2014

ChinaBean’s third (and hopefully last) open heart surgery is Tuesday. Her congenital heart defect requires a three part repair and tomorrow is the last step in the repair. ChinaBean’s heart has one working ventricle. Last year’s surgery took all of blood traveling above her heart (upper body) and directed it straight into her lungs using gravity. Tuesday’s surgery will now take all of the blood below her heart (lower body) and run it directly to the lungs, bypassing the heart. It is called the Fontan procedure.

She is a firecracker, but it has served her well.

All I can say is what a difference a year makes. There is still fear, apprehension and large dose of seriousness leading up to this surgery, but we have experienced the good life since her last surgery. We know how good it feels to watch ChinaBean live her life without worrying (too much) about what is going on inside her special heart and grappling with the should of, would of, could of’s. After her surgery last year we were told to go and live life and we’ll see you in a year! We were encouraged to watch her grow and keep her around other children and running outside. No need to keep ChinaBean in a bubble!

Last summer, the night before ChinaBean’s surgery was terrifying. I didn’t know what the surgeon would find during the operation (ChinaBean has a very unique heart…why be boring, right?), I had no idea what she would look like after her surgery and how she would handle the recovery, I was worried about living in a hospital for a week or so and I was sad that I had to spend more time away from our older two daughters.

Many of those fears have disappeared, although the surgery is still a scary thought, I am ready to watch ChinaBean live the good life some more. I want to be other the other side of the surgery and helping her along the road to recovery.

After last summer's surgery, we were told to expect ChinaBean in the hospital for 7-10 days. She was a rock star and was discharged after 5. This year, we are told to expect a hospital stay of 14 days. A complication of this surgery are pleural effusions (fluid build up around her lungs) and there is nothing that we can do speed it up. We just have wait for the fluid to drain.

As we wait and cheer on ChinaBean during her recovery, please pray with us for these specific things:

6 am Tuesday, July 8: That we would arrive safely at the hospital and ChinaBean would not be afraid. That her surgeon, nurses and anesthesiologist be well-rested and prepared for her surgery.

7-8 am Tuesday, July 8: That ChinaBean would separate from us without fear.

8-9am Tuesday, July 8: That ChinaBean would peacefully go under anesthesia and that all the grandparents would safely arrive in Peoria

10-11am Tuesday, July 8: That ChinaBean would safely go on to the heart and lung machine

11am-3pm Tuesday, July 8: That ChinaBean would successfully respond to the Fontan procedure and come off the heart and lung machine. That she would return to her cardiac room breathing room air and not dependant on a ventilator.

3pm-midnight Tuesday, July 8: That ChinaBean would be settled in her room, come off of her anesthesia well and begin the recovery swiftly.

Jamie is scheduled to return to China 2 weeks from ChinaBean’s surgery, so prayers would be appreciated that she recovers quickly (I am secretly praying for 10 days) that we might be able to enjoy a few days together as a family of 5 before Jamie flies.

If you wish to cheer ChinaBean on during her recovery, I know that she would love to see videos from each and everyone one of you even if she doesn't know you personally. Just saying hearing her name in a video and a quick message about feeling better would be amazing. If you’d like to do that, you can send it to me via an email, Facebook message, Skype video message (our Skype name is mcclintock.family) or any other way you can think of. OSF St. Francis also allows you to send a free e-card to patients. Go to their website and enter our information (A. McClintock, 4th floor) and the hospital will print out the card and deliver it to ChinaBean’s room. Keeping ChinaBean’s appetite up will also be a challenge and any offers to bring her rice/fried rice, pizza, fresh berries or other fruit, plain vanilla ice cream or chocolate will not be refused!

Ready to be on the road to recovery!

There is a saying in Mandarin “jia you” (pronounced ‘jai yo’) that is chanted and yelled at sporting events to encourage the players. One website said that jia you is used “to cheer or encourage someone in action: persist! with more effort! Don't give up!etc.” Will you join us and say “jia you” to cheer on our ChinaBean?

Thursday, July 3, 2014

We did it!We survived another school year.The last 1 1/2 months were hard and long, but we made it.

LBean finished year 3 (2nd grade for those in the US).

LBean's First day of Year 3, Fall 2014

Last day of Year 3!

First Day of Pre-K last fall.

Last Day of Pre-K, June 2014

EBean finished K1 (or pre-kindergarten). She will join her big sister at Dulwich College next year as a year 1 student.

LBean finished school almost 2 weeks ago on a Friday and we flew to the US the very next day. The flight was long, but good. We were delayed leaving Shanghai. A United flight attendant shared with me on my last trip to the US that China gives preference to Chinese airlines for take off, so now we have an explanation for why we always sit on the tarmac for 45-60 minutes before take off. We landed in Chicago during a summer thunderstorm and then had to wait on the tarmac for 40 minutes until the lighting was 20 miles away (so the grounds workers could direct us to the gate).

We spent our first night in a hotel where we "napped" from midnight until 3:30 am (ugh, I hate jet lag). LBean asked about breakfast around 4am and I had to break the news to her that food would not be served for another 2 hours.

At this point in the morning we had been up for 4 hours (sigh).

The girls vetoed this idea for breakfast...

Instead they chose this...

After breakfast we loaded up the minivan and started south. The girls were teasing Jamie and calling him by our Chinese driver's name. We arrived in Washington too late to attend our home church's first service, but the extra time allowed us a chance to grab some tasty donuts and drive by our house "lot". If I try to say, "Let's drive by the house" it just gets caught in my throat, so it's just easier to say let's drive by the lot. It was the first time the girls had seen what is now just a big mud pile. We ate our donuts in the driveway and I am looking forward to how different our view will be a year from now.

Future home of the McClintock family!

Haircuts with cousin Ali!

The remainder of our first week was spent trying to enjoy all the sweetness that summer can offer. Lots of time outside in the grass, playing in the flowers and swinging on the tire swing. Yummy food (hello molcajete bowl, hot dogs and ice-cream), summer reading program at the local library (where I worked in high school), a trip to Target and lots of time with the family & friends.

That's a long row of swinging girls, my
three girls plus a college friend's three girls.

EBean is preparing for her third (and hopefully final) open heart surgery. This week we met with her amazing cardiologist and, as I type this, she is having a diagnostic cardiac catheterization. If all goes well, she'll come home tonight. The current plan is that her surgery will be next Tuesday morning.

Waiting for our appointment
with the cardiologist.

Blurry picture, but rousing rendition of
"Let It Go".

More summertime goodness. Frozen yogurt this time!

Classic American moment...drove the SUV to Lowe's
on a Saturday afternoon.

In between appointments and procedures, Jamie and I have been trying to take advantage of being in the same time zone as our house contractor. We're trying to finalize our floor plan and we've begun the monumental task of choosing flooring, cabinets, counter tops, etc. Too many choices! Plans for the house keep us from dwelling on ChinaBean's surgery and the surgery keeps up from obsessing about the house, but I don't really recommend people willingly choosing to do both!